I don’t get mystical about much in this universe. But one of the biggies is words. They have power and meaning. Anybody who tells you otherwise is either ignorant or trying to sell you a nice patch of desert in Florida.

More specifically, however, I get mystical about the naming of things. If something has a name, it can be understood. It can be identified. And most importantly, it can be seen. So no surprise that I should feel that way, having spent the past 30 or so years of my life without a name for my medical condition.

But what I’ve only now just begun to see is that I’ve been on an almost unconscious quest to find that elusive name. I became a medical editor, which is a very specialized niche in the editorial world. I’ve read hundreds of thousands of case studies of rare diseases or illnesses. All of which are, when you get right down to it, nameless people. Just like me.

Medical research, however, is not just my career. I’m actually a geek for it. Send me a CNN article about a gene therapy to cure diabetes, and the first thing I do is hunt down the original article. Somehow, reading the original author’s words carry more weight. More meaning and, yes, power.

A friend is diagnosed with a rare form of cancer? The new antidepressant prescribed for them has weird side effects? I happily truffle about for journal articles and abstracts to root out useful information for them.

I blushingly admit that I keep PubMed bookmarked as a favorite. I will think nothing of driving to UCLA or UCI medical library if I cannot find online the exact article I want. Finding just the right bit of published research is like unearthing Aztec treasure, to my mind.

I now realize this is my unconscious way of trying to identify my own condition. To find that one bit of research that makes the last 30-plus years of my life make some sort of sense — at least from a medical perspective. Maybe, just maybe, it might actually give me a name.

One Response to If I Only Had a Name

Yeah, I can understand your feelings. But I can also state that once they have name for your illness you become that name. What is worse, if you have multiple things wrong, the doctor fixates on the illness he knows, or worse is the Most Popular and forgets the rest of them.
As you know, Big Harold has been had some major illnesses the last few years. But at the top of his chart is “Heart Condition”. So while he is dying from an infection, they want to treat His Heart!! And won’t do certain things because of His Heart.
They delay his colon surgery which he desperately needed because of His Heart. Never mind that delay could mean he goes from almost having colon cancer to having colon cancer. We must protect His Heart!
We are quite sure that what will kill him is something that is treatable but treatment was delayed too long because they wrangled about what do to about His Heart.
The worst is that His Heart Condition is from Rheumatic Fever as a child and most doctors only know how to treat Heart Conditions caused by too much cholesterol in the blood. Which is a whole ‘nother kettle of fish and has a whole different set of Ways to Treat It. In fact, the Head of Cardiology specifically warned me to make sure that certain things used to treat normal bad hearts be specifically avoided. And there are others we have learned the hard way should be specifically avoided.
And we won’t go into Heart Healthy Diets which are Very Bad for people who are missing colons.
So Yes, Having a Name can be useful. But there is a Big May Be on that label.
Good Luck in your search.